Knowledge Requirements and Unmet Needs of Informal Caregivers of Patients with End-Stage Kidney Disease (ESKD) Receiving Haemodialysis: A Narrative Review

Abstract

Background: Patients with end-stage kidney disease receiving haemodialysis rely heavily on informal caregivers to support them living at home. Informal caregiving may exact a toll on caregivers’ physical, emotional, and social well-being, impacting negatively on their overall quality of life. The aim of this narrative review is to report knowledge requirements and needs of informal caregivers of patients with end stage kidney disease (ESKD) receiving haemodialysis. Methods: The review followed the Preferred Reporting Items for Reporting Systematic Reviews and Meta-analyses (PRISMA). Five electronic databases were searched: Web of Science, PsycINFO, Embase, Medline, and CINAHL to identify the experiences and unmet needs of informal caregivers of patients with end stage kidney disease (ESKD) receiving haemodialysis. Results: Eighteen papers were included in the review and incorporated a range of methodological approaches. There are several gaps in the current literature around knowledge and informational needs and skills required by informal caregivers, such as signs and symptoms of potential complications, dietary requirements, and medication management. Although most research studies in this review illustrate the difficulties and challenges faced by informal caregivers, there is a paucity of information as to which support mechanisms would benefit caregivers. Conclusion: Informal caregivers provide invaluable assistance in supporting people with ESKD undergoing haemodialysis. These informal caregivers however experience multiple unmet needs which has a detrimental effect on their health and negatively influences the extent to which they can adequately care for patients. The development of supportive interventions is essential to ensure that informal caregivers have the requisite knowledge and skills to allow them to carry out their vital role.

Caring burden and coping with haemodialysis: a qualitative study with family caregivers in Sri Lanka

“…In accordance with the findings of a study, Rwandan family caregivers expressed personal satisfaction and a sense of responsibility as their motives in care provision 6. In previous studies, religion and spirituality as a coping strategy mainly emanated in the Islamic context 30. In contrast, the present study provides a new ground for coping through religion such as Buddhism.…”

Effect of Family Centered Empowerment Intervention on Burden and Coping Strategies among Caregivers of Hemodialysis Elderly Patients

“…They found that caregivers who reported social isolation, chronic health problems, and little time for self-care had more severe levels of burden than those who did not have chronic health problems. Additionally, this result was consistent with Matthews et al, (2021). They studied "Knowledge Requirements and Unmet Needs of Informal Caregivers of Patients with End-Stage Kidney Disease (ESKD) Receiving Hemodialysis: A Narrative Review."…”

Cognitive behavioural therapy self-help intervention preferences among informal caregivers of adults with chronic kidney disease: an online cross-sectional survey

“…Caregivers indicated interest in most suggested intervention topics, including living with CKD, support services for caregivers, physical health, and diet. A review of information needs among caregivers of people with end-stage kidney disease [ 66 ] found that caregivers had a number of unmet information needs and generally did not receive enough information about practical aspects of caring for someone with CKD or understanding the condition. Available information was considered generic and not tailored to the needs of caregivers of people with CKD [ 66 ].…”

“…A review of information needs among caregivers of people with end-stage kidney disease [66] found that caregivers had a number of unmet information needs and generally did not receive enough information about practical aspects of caring for someone with CKD or understanding the condition. Available information was considered generic and not tailored to the needs of caregivers of people with CKD [66]. Tailoring interventions, in terms of content and delivery format, could be a way to meet caregiver's varied needs, and appears important to enhance acceptability [67][68][69].…”